Becoming futile: the emotional pain of treating COVID-19 patients.

Introduction: The COVID-19 pandemic has had a profoundly detrimental impact on the emotional wellbeing of health care workers. Numerous studies have shown that their rates of the various forms of work-related distress, which were already high before the pandemic, have worsened as the demands on health care workers intensified. Yet much less is known about the specific social processes that have generated these outcomes. This study adds to our collective knowledge by focusing on how one specific social process, the act of treating critically ill COVID-19 patients, contributed to emotional pain among health care workers. Methods: This article draws from 40 interviews conducted with intensive care unit (ICU) staff in units that were overwhelmed with COVID-19 patients. The study participants were recruited from two suburban community hospitals in Massachusetts and the interviews were conducted between January and May 2021. Results: The results show that the uncertainty over how to treat critically ill COVID-19 patients, given the absence of standard protocols combined with ineffective treatments that led to an unprecedented number of deaths caused significant emotional pain, characterized by a visceral, embodied experience that signaled moral distress, emotional exhaustion, depersonalization, and burnout. Furthermore, ICU workers' occupational identities were undermined as they confronted the limits of their own abilities and the limits of medicine more generally. Discussion: The inability to save incurable COVID-19 patients while giving maximal care to such individuals caused health care workers in the ICU an immense amount of emotional pain, contributing to our understanding of the social processes that generated the well-documented increase in moral distress and related measures of work-related psychological distress. While recent studies of emotional socialization among health care workers have portrayed clinical empathy as a performed interactional strategy, the results here show empathy to be more than dramaturgical and, in this context, entailed considerable risk to workers' emotional wellbeing.

Positive identity development through community engagement among youth with intellectual and developmental disabilities.

BACKGROUND: Identity development in individuals with disabilities is often negatively impacted by exclusion, marginalisation, and stigma. However, meaningful opportunities for community engagement can serve as one pathway towards establishing positive identity. This pathway is further examined in the present study. METHODS: Researchers used a tiered, multi-method, qualitative methodology consisting of audio diaries, group interviews, and individual interviews with seven youth (ages 16-20) with intellectual and developmental disabilities, recruited through the Special Olympics U.S. Youth Ambassador Program. RESULTS: Participants' identities incorporated disability while simultaneously transcending the social limits of disability. Participants viewed disability as one aspect of their broader identity, shaped by leadership and engagement experiences such as those offered by the Youth Ambassador Program. CONCLUSIONS: Findings have implications for understanding identity development in youth with disabilities, the importance of community engagement and structured leadership opportunities, and the value of tailoring qualitative methodologies to the subject of the research.

Reconfiguring the social organization of work in the intensive care unit: Changed relationships and new roles during COVID-19.

The COVID-19 pandemic caused hospitals to make changes to workflow that exacerbated emotional exhaustion and burnout among health care workers. This article examines one of those changes, restricted visitation, showing how it changed the social organization of work by upending established interactional patterns and relationships between health care workers, patients, and patients' families. Based on 40 interviews with intensive care unit (ICU) workers in units that were full of COVID-19 patients and had fully restricted visitation, study findings show that staff took on emotional support roles with patients that had typically been done by families at the bedside. They also faced increased anger, distrust, and misunderstandings from families who were not allowed to see their dying loved one. With each other, staff bonded together with dark humor and candid talk about the scale of deaths, constructing a shared understanding and solidarity amidst the tragedy of the pandemic.

When the Normative Is Formative: Parents' Perceptions of the Impacts of Inclusive Sports Programs.

This qualitative study examines the perspectives of parents of youth with intellectual and developmental disability (IDD) who participated in Special Olympics Unified Sports®, a program in which high school students with and without IDD compete on the same team. Based on semi-structured interviews with parents (n = 23) as part of a larger evaluation of Special Olympics Unified Champion Schools in three states in the United States, thematic analysis shows that parents perceived improvements in their child's social and emotional skills, including demeanor and attitude, an enhanced sense of belonging at school, the emergence of new friendships and social opportunities, and rewarding interactions that flowed from the opportunity to engage in normative activities. Implications for schools and families are discussed in terms of the importance of providing and facilitating meaningful opportunities for inclusive extracurricular activities such as sports for youth with IDD.

Social and organizational practices that influence hospice utilization in nursing homes.

Hospice has grown considerably but the likelihood that someone gets hospice depends on social and organizational practices. This article shows how staff beliefs and work routines influenced hospice utilization in two nursing homes. In one, 76% of residents died on hospice and in the other 24% did. Staff identified barriers to hospice including families who saw hospice as giving up and gaps in the reimbursement system. At the high-hospice nursing home, staff said hospice care extended beyond what they provided on their own. At the low-hospice nursing home, an influential group said hospice was essentially the same as their own end-of-life care and therefore needlessly duplicative. Staff at the high-hospice nursing home proactively approached families about hospice, whereas staff at the low-hospice nursing home took a reactive approach, getting hospice when families asked for it. Findings demonstrate how staff beliefs and practices regarding hospice shape end-of-life care in nursing homes.

When Clinicians Drop Out and Start Over after Adverse Events.

BACKGROUND: The impact of adverse clinical events on health care workers has become a growing topic of research. Previous research has confirmed that after adverse clinical events, clinical staff often feel as though they failed not only their patient but also themselves, resulting in second-guessing of their clinical skills, competencies, and even career choices. This exploratory study reports on the experiences of health care providers who changed career paths as a consequence of an adverse clinical event. METHODS: The authors designed a 39-question survey capturing personal and professional demographics, participant recall of the clinical event, insights into their lived experiences, health care institutions' response(s) to the event, decision-making influences relating to future employment, and insights into interventional strategies. RESULTS: Consistent with prior research, clinicians reported a pattern of inadequate social support after the event. Results further show the salience of emotional labor as a driving force among those who changed roles. In clinicians' own assessments about the lasting impact of the event, many felt less joy and meaning in their new clinical roles, but others thrived by rededicating their careers toward implementing patient safety initiatives and enhancing peer-support networks. Clinicians reported a desire for more transparency and support to help them recover. CONCLUSION: Clinicians aligned their emotional displays to be consistent with organizational expectations, resulting in suppressed feelings of guilt and shame that may have contributed to burnout, changed roles, or even premature retirement. Study findings highlight the need to develop better support systems for clinicians who are party to an adverse clinical event.

Implementing the MOLST (medical orders for life-sustaining treatments): Challenges faced by nursing home staff.

This study examined how the Medical Orders for Life-sustaining Treatment (MOLST) is implemented in two nursing homes in Massachusetts; one had primarily long-term care residents and high hospice utilization, the other had low hospice utilization and a high proportion of post-acute care residents. Qualitative in-person interviews with 21 staff members who had a role implementing the MOLST explored their experiences using the form in their daily work routines. Staff at both nursing homes described benefits of the MOLST such as providing guidance for staff and family. Yet, they also gave detailed accounts of challenges they face in implementing the form. They reported problems with the form itself such as confusing language and conflicting categories as well as a set of procedural challenges that undermined the timely completion of the form. The nursing home with more post-acute care residents faced more challenges with transferability of the MOLST to and from hospitals.

Who is on the medical team?: Shifting the boundaries of belonging on the ICU.

Medical teamwork promises to improve communication and collaboration in the healthcare industry, yet critics argue teamwork is little more than a new managerial discourse to obscure traditional workplace hierarchies. Based on 300 h of participant-observation and 35 interviews with staff of a medical intensive care unit at an academic medical center, this article argues that teamwork is neither a panacea for coordinating complex care nor is it simply a discourse to control workers; rather, it is an ongoing social activity characterized by boundary-work, negotiation, and resistance over the terms of membership. This study identifies three processual and temporal phases of families' participation in medical teams: (1) Constructing Teamwork, (2) Deflection and Resistance, and (3) Reintegration. Staff leveraged ambiguities in the meaning of teamwork to manage patients' family members' participation on the ICU Team. Family involvement changed in patterned ways that reflected the power staff had to define the team and the character of teamwork. Families participated on the team at admission, but their involvement narrowed considerably as staff implemented diagnostic and treatment plans. When staff determined a patient was appropriate for palliation, families were reintegrated back into a leading role on the team as surrogate decision-makers. This study advances current understandings of medical teamwork, staff-family interactions, and it highlights the value of qualitative methods in social-science research about medicine.

Narrating dementia: self and community in an online forum.

In this article, I examine how individuals diagnosed with early-onset Alzheimer's disease use illness narratives to construct community. The ability to narrate is a fundamental component of the self. Using 354 posts by 32 members of an Internet forum, I argue that people with Alzheimer's, whose ability to narrate, and thus create a self, was compromised, nonetheless managed to tell stories of redemption out of which a salvaged self emerged. Narratives are essential for the construction of self, but as I show in this article, they are also essential for the construction of community. Forum members shared stories, gave advice, offered encouragement, and commiserated about their symptoms in ways that generated solidarity. Internet forums provide a venue for people with illnesses who are unable to leave the home to construct community.

"It's a Dignity Thing": Nursing Home Care Workers' Use of Emotions.

This article examines how nursing home care workers use emotions to construct dignity at work. Previous scholarship has shown how the financial and organizational characteristics of nursing homes shape and constrain emotion work among staff. Using evidence gathered during 18 months of participant observation in two nursing homes and 65 interviews with staff, this article analyzes how, despite obstacles, nursing home care workers generated authentic emotional attachments to residents. Surprisingly, some staff members said they particularly appreciated working with residents difficult to control. They felt accomplished when such residents successfully transitioned from life at home to life in institutional care. Emotions created dignity for staff and induced compliance among residents. Emotions are not only generated by organizations and imposed on workers; staff themselves produced emotions-sometimes in ways consistent with organizational demands, and sometimes not-and they consistently found in their emotions a resource to manage the strains of their work lives.

Attributions of Agency and the Construction of Moral Order: Dementia, Death, and Dignity in Nursing-home Care.

Using evidence gathered during 18 months of participant-observation in 2 nursing homes and 65 interviews with staff, this article examines how nursing-home staff use agency as a rhetorical resource to construct a dignified workplace. Staff attribute agency to dying residents, saying they choose the timing and conditions of their death. Staff equally insist that aggressive residents do not have agency. These two sets of attributions are used as counterpoints. Both go well beyond the available facts of the situation and reflect unspoken assumptions and interests of nursing-care workers. Through these attributions, the staff achieves a situated moral order in which compassionate care is provided to deserving residents in caring nursing homes. Staff attributions of agency are collectively shaped by professional philosophies, training and education, and regulatory guidelines. Finally, this article shows how it is analytically and theoretically productive to recast agency as a cultural object, whose use is subject to empirical investigation, rather than as a theoretical construct.

"Are You an African?" The Politics of Self-Construction in Status-Based Social Movements.

Current debates over identity politics hinge on the question of whether status-based social movements encourage parochialism and self-interest or create possibilities for mutual recognition across lines of difference. Our article explores this question through comparative, ethnographic study of two racially progressive social movements, "pro-black" abolitionism and "conscious" hip hop. We argue that status-based social movements not only enable collective identity, but also the personal identities or selves of their participants. Beliefs about the self create openings and obstacles to mutual recognition and progressive social action. Our analysis centers on the challenges that an influx of progressive, anti-racist whites posed to each movement. We examine first how each movement configured movement participation and racial identity and then how whites crafted strategic narratives of the self to account for their participation in a status-based movement they were not directly implicated in. We conclude with an analysis of the implications of these narratives for a critical politics of recognition. Keywords: identity politics, social movements, race, self, hip hop.